By Jane Elliott
Health reporter, BBC News
Jane has suffered three years of pain
When Jane Humphris was told she carried a defective breast cancer gene she made the difficult decision to have both breasts removed, aged just 24.
She knew the faulty copy of the BRCA1 gene increased her risk of developing breast cancer by up to 80% and had no doubts that surgery was the best option.
But over three years later Jane said she is still in almost constant pain from the surgery and that doctors did not warn her that 'post-mastectomy pain syndrome' was a very real possibility.
Jane, who has a family history of breast cancer, said that if she had known the level of the pain that she would have to endure, she would have made a very different choice and opted for a life-time of screening and being very breast aware.
"There was a significant risk this could happen, considering my young age and it was not once incorporated into my decision making process," she said.
"I was later told that there was a 65% chance of this happening by one pain specialist and a 20% risk by another."
Jane said the Royal Marsden, where she received her treatment, did not alert her to the risks or take her pain seriously when she first reported it, and that she had to fight for pain relief.
She claims friends having surgery the same hospital have told her that they too were not warned of the pain risk.
"Infection was mentioned to me, the scars were mentioned, the emotional difficulties were all discussed in detail and the Marsden and the genetics team spent a lot of time discussing them," she said.
"But this risk of nerve damage, which has left me in pain was never mentioned and for three years it was not taken seriously. Now all they can do is manage the pain."
More information wanted
Dr Julie Bruce, a senior research fellow at the University of Aberdeen, is currently leading a study into post mastectomy pain syndrome.
She said that pain such as that experienced by Jane is more common than previously thought.
"In the 1980s it was thought that persistent pain was a rare adverse effect of surgery," she said.
"Many studies have since investigated recovery after treatment and it is known, from studies conducted in the UK and internationally, that up to 30% of women can have persistent pain after their surgery."
But she said some hospitals might still not be informing patients of the risks.
"It is not clear to what extent this complication is discussed with patients routinely before surgery, it depends upon awareness of the condition. In Aberdeen, persistent pain is now mentioned in the patient literature as a possible complication, but not all centres may do this.
Jane had her mastectomy and reconstruction at the Royal Marsden Hospital
"Our local research has helped raise awareness of the condition. Our current research team includes surgeons, anaesthetists and breast care nurses and this collaborative approach has helped raise awareness."
Jane Humphris said her pain levels are 'unacceptable' and that she should have known about them.
"I have a constant aching under my arms and across my chest. I also have a shooting, burning pain - the kind of pain that takes your breath away.
"On a good day this might happen five to six times and and on a bad day it is pretty much constant.
"This risk of pain is very serious information and I made a decision without this."
Dr Bruce agreed that women needed the information to make informed choices.
"In a previous study of women having breast cancer surgery, we found that up to 40% of women had pain up to one year after treatment.
"For some patients, this pain can resolve gradually over time although this can take many years.
"This persistent pain is known to occur after other operations, including groin hernia repair.
"We need to raise awareness of these late complications so that surgeons and/or the clinical team can explain risks to patients and help them weigh up the risks and benefits of undergoing an operation."
An angry Jane has said she has decided not to pursue a legal case against the Royal Marsden, but says she does feel badly let down by them.
"I do not think this should stop women take the step towards surgery because the surgery is essentially a life-saver, but women should be making these choices based on all the information.
"I just want to draw attention to this," she said.
A spokesman for the Royal Marsden said the hospital was unable to comment on individual cases due to patient confidentiality.